Wednesday, November 28, 2007
Our friends Karen and Sam visited for our first Thanksgiving breakfast.
This year we did something a little different which worked out marvelously. My original intent was to make a traditional thanksgiving dinner but that did not work out and it would have been too much work anyhow. My friend Karen suggested having a breakfast which was so much easier and really a pleasant way to start the day visiting with our friends.
We had pumpkin pancakes, chicken apple sausages, baked bartlet pears with apricots, raisens, and almonds, and hot spiced apple cider.
The night before I peeled all the pears to bake in the oven the next day, the sausages I just had to throw on the grilling machine, and the pancakes were easy to make. A half hour or less afterward my kitchen was clean and we were ready to head to Seattle.
I was actually feeling great that day and the weather was clear and sunny which was an added bonus.
This year we had decided to volunteer somewhere but we apparently did not plan far enough ahead. A week and a half before Thanksgiving I scoured the internet and local papers for an opportunity where we could contribute. Surprisingly, it was not as easy to find as I had anticipated. I assumed I would just open the paper to find an ad for volunteer opportunities for thanksgiving day or a master list on the web.
I did run across a Seattle Times article online that said you must reserve early for holiday volunteer activities as they fill up fast. With the article was a link to a few places needing volunteers. Not all of them happened on Thanksgiving and not all of them were close. I found one near us but when I got an email back to my inquiry they no longer needed help.
Another friend I asked had suggested the Union Gospel Mission in Seattle. When I checked out the website it mentioned they serve 3 meals a day 7 days a week. I thought they would surely need help and when I called I was pleased to learn from the intern on the line that they could use us.
So Harley and I were all excited. We were set to volunteer Thanksgiving afternoon at the women's and children's shelter. However, when we got there our names had not been added to the volunteer list! They did not need us. So we walked over the the men's shelter to see if we could chip in there.
When we arrived were many volunteers there also. We were given the task of waiting at the front door for any donations generous people dropped off. After sitting there for close to 2 hours there was only one group who dropped off things for us to help carry in. There was not any other tasks for us to do so we left and enjoyed that last bit of the nice day and setting sun over Elliot Bay.
It was interesting because after all this we had only eaten breakfast and a cheese stick. We did not stop at the open restaurants on the water front as we were in the mood to eat turkey instead of fish. We were sure there would be something open in Redmond so we waited to drive there even though we were famished.
Now here is a thing about gratitude and not fully being able to appreciate it until you are able to experience the other side. When we were down in Seattle we saw the homeless waiting to get out of the cold and enjoy a hot meal. They had no families and on Thanksgiving day they were waiting out on the street with their backpacks or bags of their only belongings. Some were young and some were old. One had to wonder about their lives and how they got there. One boy had to be 16 or 17, maybe even 15. He clearly was a run away. Wow! Can you imagine being a kid and not having a safe home and refuge to go?
So back to my story. I don't think there ever was a Thanksgiving day where I became that hungry. I always had things provided for me and I never witnessed what it was like for people who did not have that. I grew up in Upper Michigan so I never truly was exposed to homeless in the big city.
Like those waiting for a thanksgiving meal, we had to wait for whatever was available. When we got to Redmond (the closet town to our home) we were disappointed to find that none of the restaurants were open. We sure had our bellies set on the Claim Jumper which served turkey meals.
Of course by this time (6 pm or later at night) we were pretty hungry after only having breakfast and wanted something quick and convenient (although I have to say even though McDonald's was the only thing open we were not that desperately hungry). Fortunately Safeway was open where we were able to put together already prepared dishes and a hunk of precooked lunch meat turkey.
So even being hungry we were fortunate to have options: A)McDonald's B)An open grocery store and C) A warm and safe home stocked full of food we could prepare. We were able to afford food and had a shelter.
Experiencing it that way and seeing it that way, I would have to say it was one of the most meaningful thanksgiving's I have known.
Tuesday, November 20, 2007
Monday, November 19, 2007
Things I can do:
- public pool - yes the incision is healed
- running - yes, gradually
- weight training - yes, gradual increase of weights
standing on my head - yes, for 10 minutes a day.
LOL, sorry I had to throw a little humor in there! ;o) I am just joking about standing on my head of course. They do perform that in yoga but I don't do it as I would probably break my neck before passing out! LOL
Problems I have been having:
Hand writing is very difficult. Reason - The tumors were located in the area of the brain that controls fine motor skills. That area of the brain needed to be retracted (lifted up) to access them. As a result, there could be swelling of that part of the brain which causes weakness in certain muscle coordination. As the swelling decreases the coordination of my right (writing hand) will improve over time.
I have noticed a difference from first coming home. I could even sense it the first time I did dishes as scrubbing food off a pot/pan was not very efficientt. When I first came home it was also VERY difficult to document my progress. Writing was EXTREMELY slow! I was glad to have typing ability which surprisingly (and still is) better and faster than handwriting (I am a crappy typist: maybe 25 to 30 words per minute or less on an ergonomic keyboard). I do notice some improvement writing when doing upper arm weight lifting.
Blinking of the right eye is delayed and does not close fully (results in drying out and irritation of the eye); This should improve with time as the inflamation of the nerve decreases.
The tumor was also on the nerve that controls sensation so my taste should also improve over time.
Head rushes - should not be related to the surgery. I am still anemic. Now that I recall, I also experienced the head rush/vision blackening many years ago when I was anemic. I am not a steak eater so I really do not consume any red meat. I am a white meat kind of gal (poultry, seafood, and pork). Therefore, I am back on Slow FE (iron) which I took about a year ago when my hemoglobin and oxygen carrying blood counts were low.
I have really felt low on energy over the past week and working out is much harder than before. My muscles fatigue easily and I am physically tired also. I thought this was primarily from the steroids wearing off and not working out regularly for 2 months. I am relieved to have a better explanation then just thinking I was totally getting out of shape fast.
With my taste change I have stopped drinking V8 and eating bananas unfortunately which are very high in potassium. I have been having aching shin pain in my right leg at night which is probably related to my low potassium level and not the blood clot I had previously as that results in a different kind of pain. So I am taking the potassium supplements again which I stopped using when I went off the Diamox medication (Diamox depletes the body of potassium so I had to take supplements and eat high potassium foods to prevent lower leg muscle cramping).
Pain behind left eye and involuntary muscle spasm of the lower left eye lid - not sure what is going on there. The pain behind my left eye has seemed to go away within the past few days. We will make a note of these things to watch and take a look at the next MRI coming up.
It is possible to have another surgery right after a previous one if needed. However, my surgeon does not want to operate on that tumor at this time. It is smaller than the two I had removed. It is not big enough yet to warrant a surgery. These tumors are not removed unless they are producing problematic symptoms or growing to a large size.
Now that may seem a little confusing for some reading this as they have had tumors removed that were small or smaller. Remember I am completely deaf. Thus hearing preservation which some pursue when operating on smaller tumors is not an issue for me.
We will continue to monitor this tumor through MRIs like the others. My last MRI was in September (prior was April). The next one is in a few weeks. It is routine to do the MRI 3 months post surgery after the swelling has gone done. After that, as long as I am not having a problem, the MRI schedule will return to every 6 months again.
Other interesting tidbit -
Between my ear and the incision my scalp is numb. I can tap it and it does not feel like I am tapping my head. From making the incision some sensory nerves are cut and sacrificed. The feeling may come back or the lack of sensation may be permanent.
Things I was finally able to take care of that I could not or did not have time to do before the surgery -
Get a haircut/trim
Get my last dental cleaning for the year (when it was due I had the onset of trigeminal neuralgia)
Katie and Jake also got to have their bath today at Petco. :o) They were all excited to be clean and not stinky. Now they will go roll around in the dirt again! LOL ;o)
Friday, November 16, 2007
Sweet things are not sitting too well with me yet depending on what it is. Last Saturday we went out to dinner at Chili's with my sister and DJ and I ordered the Caribbean Grilled chicken salad which I did not find satisfying at all. It sounded good (topped with pineapple and mandarins with a lime vinegarette). That is the thing...sometimes food looks good from my memory of it but then the taste is another story.
I tried to eat the chicken off of it and the lettuce with no dressing. Yet the chicken was too dry for me to swallow. Later I switched with my sister as she had the asian lettuce wraps. LOL It was as if I went from eating pure sugar to pure salt! Thank goodness we had a bag of wasabi peanuts in the car for afterward!
I found a something which I totally enjoy and can eat! Apples are a no no for me with my facial paralysis. I have a hard time taking bites out of the apple and not chewing my lip. However, I find that I can still have apples by eating apple sauce or slices. Normally granny smith or green apples are too tart for my taste. Yet, I do enjoy them on salad sparingly and bought a bag of Chiquita green apple slices the other day. This evening I decided to try one and ended up eating nearly the whole bag they were so fantastic!
So that is my new thing - Green Apple Slices
The other night I had vegetarian pizza from Papa Murphies with tomato sauce that agreed with me. Dark chocolate fortunately is something else that I am still able to savor.
Thursday, November 15, 2007
Papilledema Secondary to Intracranial Tumor
Bilateral,fellow eye: the signs of disc swelling are less pronounced. Moderate blurring of the disc margin is associated with moderate hyperemia, venous dilation, and coarsening of the peripapillary nerve fiber layer. This case demonstrates asymmetric papilledema.
Stephen C. Pollock, M.D., Durham, NC, USA
Below: View of optic disc and nerve of my left eye
Monday, November 12, 2007
Tuesday, November 06, 2007
Monday, November 05, 2007
Relative size of the tumors: vestibular schwannoma - 3.4 cm
meningioma - 2.5 or 2.8 cm
Photo taken October 4th, 2007 (first week home after surgery). Click the lighthouse link in the post title above to see a diagram of this surgical procedure: Subocciptial Craniectomy via Retrosigmoid Approach Here is a picture of the incision so you can see how large of an area they had to drill in order to reach the tumors. The incision is in the shape of a C behind my ear. From what Harley told me, it had to be this large so they could lift my cerebellum (the back part of the brain) in order to access the 2 tumors near my brainstem.
Originally my mom told me the stitches were brown. I later came to learn that the dried blood on my scalp made them appear that way when in fact they were translucent white like fishing line. Two and a half weeks after surgery Harley had picked a couple of these pieces off that were sticking out of my head. The stitches are dissolvable so they sloughed right off.
The surgeon's report of the procedure is absolutely amazing! It is very technical however, so I will provide a description in layman's terms.
First I was placed in a position known as "prone" which is face down like getting a massage. For this procedure I was arranged at "three quarters prone" (which means I was partially upward and not lying completely flat on my stomach). After removing the bone and lifting the cerebellum, a microscope was inserted underneath that identified the first tumor which was gray in color. Biopsies confirmed it to be a meningioma. An instrument called a Cavitron was used to debulk and remove this tumor. Then a yellowish tumor next to it was identified as the vestibular schwannoma. The surgeon carefully dissected this tumor on its edges and identified the 9th, 10th, and 11th cranial nerves. Then he continued to dissect it by debulking it from the center and carefully dissecting it from the cerebella portion of the brain and brainstem. Also, the compression of the tumor on the trigeminal nerve had caused my symptoms of trigeminal neuralgia prior to the surgery. Thus, this area was also dissected and decompressed (pressure relieved through removal). The part of the tumor which had grown into the IAC: inter auditory canal was also removed.
Facial nerve electrodes had been placed on my face to stimulate and monitor the facial nerve. Seeing as I had experienced facial weakness from the previous radiosurgery to this tumor, the small portion of tumor around the facial nerve was left to prevent further damage.
Closing me up
The mastoid air cells were waxed, and titanium mesh and Norian bone cement used to seal the opening. Once the cement hardened, the temporalis muscle and scalp were put back in place and the incision sewn shut.
It is pretty healed by now. I have been wearing a baseball hat without a problem for a few weeks now while taking my walks. It has been itchy and I have tried not to scratch in but I think I might have in my sleep. I am pretty certain it is all healed and that next week maybe I can get a long over due haircut (trim) and hopefully dye it sometime soon. In another week I believe I will be able to return to water aerobics, go in the hot tub, and take a bath. The concern prior of doing those activities was exposure to infection.
An interesting thing to note -
The area between my ear and the incision is numb but the incision area itself is sensitive to touch.
On the area of my neck extending below my ear, I feel some bumps. This would be scar tissue that I am wondering if it will go away in time. It is a little irritating as at first touch I forget what it is and want to itch it off like some kind of bug bite or zit.
At the worst phase (2 weeks ago), my mouth tasted like I had been sucking on a burned metal pipe. I found myself tasting many things to get the flat icky metallic flavor out of my mouth! Many foods had a bad after taste that made the problem worse.
Since being nauseated lately, I find it difficult to find meals to eat which I would enjoy. There will be food in the fridge that I just do not feel like eating and thus I have to force myself to eat something. It is an oddity. I get more nauseous with an empty stomach. Therefore, I have to eat regularly.
Aside from my new love of wasabi peanuts, I find great comfort in Dreyer's brand Orange Cream Sherbert. I eat it everyday and if I had no sense I would eat it for every meal! It has the effect on me like a security blanket. When I was in the hospital orange sherbet was the first thing I was able to keep down. The cool smooth texture and mild taste of the ice cream was so relieving and still is! When nauseous it feels better to eat cold things rather than hot.
Comfort foods I find that I can eat:
- cold pumpkin pie
- cottage cheese
- strawberry kiwi jello
- roast chicken with gravy
- roast turkey with gravy
- roast pork with gravy
- mashed potatoes
- canned green beans
- soups such as clam chowder or beef vegetable
A few hours later I was dreaming of being in a doctor's office to investigate my current symptoms. I awoke to another frontal headache which was not as severe as the others and was remedied with acetmetiphin.
I am doing well enough today that I am planning on driving to the trail in Carnation and taking a walk with the dogs. They are pretty bummed out that we did not go all weekend and have been moping around. (If you know me well, you know that I really must have not been feeling good at all to have not even went outside let alone for a walk.)
I am looking forward to gaining my strength and for recovery to be on the upswing from here on out! It is time to get back my life.
Friday, November 02, 2007
The mornings have not been a pleasant awakening. My dreams have responded to my bodily reactions. Wednesday morning I had a combination of bad dreams. First I dreamt that I took an advanced science class that inv0lved complicated calculations. I was completely lost and nothing that was discussed could be found in the book. The contents of the book were as obscure to me as if I were looking at a book written in a foreign language that I did not know. What was worse is that I had an hour or two to study (cram) for the final exam when I didn't know a darn thing. I felt utterly hopeless and panicked. In the dream I knew there was not even a chance to attain one point out of hundred. In my dream the pain in my head intensified with my stress.
Then to top it off, the dream shifted to being thrown out of a helicopter into the icy English Channel. The water was rough and pieces of ice were floating around. I had a life preserver but the people who pushed me out and jumped with me wanted to take it off. I pleaded that in the rough deep water if I went under or closed my eyes, I would not be able to swim and drown.
At that point I awoke to a screaming headache and chills even though I had a down comforter on me. It was a catch 22. Even though I felt really lousy, continuing to lie down was exacerbating my headache.
So it has been like this for the past few days: constant headaches and constant nausea with episodes of the chills. Yesterday I noticed my eyes swelled up and my face sort of puffy. This morning is even more extreme. Both mornings I have rested with a cold rag on them which does not seem to be reducing the swelling around my eyes.
Today is rainy and cloudy. I may take a break today from walking. I really did not feel like it but I did force myself to get out and do it the rest of the week. Tuesday I just could n0t say no to the dogs. They peaked in the window when it was time to let me know they were ready. Of course my heart when soft and I was like "OK. Let me go get ready." Yesterday Harley took us to the dog park and Jake was so excited he started to jump in circles on the deck while I got ready. Then Katie actually ran up the ramp into the truck which she does not do. They thought I was not going to take them because they knew I was not feeling well.
I am kicking myself as the last few days have been really nice and I have been inside all day sick. I accomplished absolutely nothing yesterday and the house is turning into a cyclone. I am trying to motivate myself to do some cleaning and putting things away today (I am still working on that).
As far as the walks, the fresh cool air feels a little better and walking it out is part of the healing process. I was slower yesterday (worst I have felt since in the hospital...I have no idea how I got through that) but managed to walk twice around Marymoor dog park.
Yes. I am missing things today.
- My friend Skip's fundraising breakfast for the Team in Training with the Leukemia and Lymphoma society
- Our monthly ALDA meeting
- The Leukemia and Lymphoma Pineapple Classic
That is kind of bite. It is not like I had nothing to do today or no options. I just hope this does not last long so that I am not out of commission the rest of the month.
Next weekend is the Turkey Trot (a fun run that I will not be ready for yet) and the Wild Turkey Scavenger Hunt (which I do want to do) which are fundraiser events for the local school district's Health and Wellness program.